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On the top of his buzzed head, Kenya Wheeler has a thin, almost unnoticeable line where his hair does not grow — a surgical scar that reminds him that he, as a brain cancer survivor, will always have to live with the fear of relapse.

For the last seven months, the 38-year-old UC Berkeley graduate student in city planning has gone through countless medical procedures, taken numerous drugs and has been hospitalized for weeks at a time to treat primary central nervous system T-Cell lymphoma — a rare, high fatality rate blood cancer in the brain.

“There’s not really any documented cause with this disease — it just happens,” Wheeler said. “You can’t trace it back to genetics … that was really kind of unnerving.”

Last week marked the end of chemotherapy for Wheeler, who is now recovering at his Oakland home. His recent brain scans show no sign of cancer, which will be reconfirmed through a round of tests and scans.

But nearing the end of his treatment at the UCSF Medical Center in early spring, Wheeler received the news that he had maxed out the $400,000 lifetime cap on the systemwide UC Student Health Insurance Plan (SHIP) offered by the university. As it stands, he is looking to pay $14,000 out of pocket, he said.

Wheeler’s medical journey first began when he experienced three seizures last August and was rushed to the hospital, where doctors later told him he had a malignant tumor that needed to be treated immediately. One month later, Wheeler was on the operating table at Alta Bates Summit Medical Center in Berkeley. “It came to me … that there is not much I have control over,” he said. “This is outside of my hands. I literally had to let go. Let the doctors, let medicine do its thing.”

According to Kim LaPean, communications manager at the Tang Center, SHIP will gradually align to meet the benefit requirements of President Obama’s Patient Protection and Affordable Care Act, which does not allow a lifetime maximum cap starting in 2014.

As mandated by U.S. Department of Health and Human Services on March 21 this year, the 2012-13 school year will be the last year in which SHIP will have a lifetime maximum cap. The plan will increase to a $500,000 per year cap starting in the fall of 2013, and there will be no annual limits starting in the fall of 2014, LaPean said.

“The goal is to provide the best possible coverage to meet the most needs of the students, while keeping the plan affordable,” LaPean said in an email.

But for Wheeler — whose student insurance has now been exhausted because of the current policies — the next part of his life is to find a job and insurance that will cover his medical expenses. Though he applied for the state’s public insurance option back in February, there has been no response as of yet, he said.

Since the onset of his illness, Wheeler’s girlfriend of three years Ruby Reid updates a blog for friends and family to keep track of Wheeler’s progress and donate money to cover his medical bills, raising $550 so far, according to the website.

Last month, Wheeler and Reid were driving to the hospital for his final chemotherapy treatment when the finality of the seven-month journey hit them.

“People can die from this (treatment),” he said. “It makes everything real. It forces you to be present. And she said, ‘What if we got married?’ And I said, ‘You know, let’s just do this.’”

The two were married in the hospital’s meditation room that afternoon, before Wheeler had his last dosage of radiation wiping his bone marrow clean. They bought a bouquet of flowers, borrowed a ring from a friend, and jumped over the broom, literally.

On top of marital bliss, there is the hope that Reid’s insurance will be able to cover Wheeler’s future doctor visits and procedures.

Though the issue of insurance has placed a huge burden on the newlyweds, the couple have something to look forward to. Wheeler plans to finish his master’s degree at the end of this semester after having taken a break from school while he underwent treatment.

In July, Wheeler and his wife plan to have a wedding ceremony and community celebration for family and friends.

“We don’t know how much time we have in our life to do things,” he said. “Cliche, but it’s really true. You really have to live to make every day important.”

Weiru Fang covers Berkeley communities.

Correction(s):A previous version of this article incorrectly stated that the 2011-12 school year will be the last year in which SHIP will have a lifetime maximum cap. In fact, Fall 2013 will be the start year of the $500,000 per year cap, and Fall 2014 will be the start of having no lifetime maximum cap on student health insurance.

Kenya’s amazing! He just graduated from UC Berkeley with a Masters Degree in City Planning while undergoing intensive chemotherapy. He was also instrumental campaigning to elect President Obama and we need him healthy again so he can help with his re-election. A bunch of us friends are raising money to help pay for his medical bills. If any of you can donate, we super appreciate your kindness. Here’s the link -https://kenyahealthlove.nationbuilder.com/run_for_kenya/?recruiter_id=1827

Guest

A good friend of mine, who is also in CED, is going through a similar experience. He’s battled hard against his leukemia and is doing great, but SHIP ran out for him as well. You can read more about it here: http://www.keyt.com/news/local/Insurance-Cut-for-College-Student-with-Cancer-148192355.html

Kim LaPean

From Kim LaPean, Communications Manager, University Health Services: Unfortunately, the information about the annual maximum caps in this article are incorrect. Here is the actual information that we provided to the Daily Cal via email:
As health care reform regulations are implemented, UC SHIP aligns
to meet those benefit requirements. The final rules regarding
student health plans, released by Health and Human Services on
March 21, 2012, stipulate that plans must have the following
annual maximum limit:

-$100,000 for policy years beginning on or after July 1, 2012 (UC
SHIP’s current lifetime maximum is $400,000)

-$500,000 for policy years beginning on or after September 23,
2012 (this would impact UC SHIP in Fall 2013)

-Annual limits for “essential health benefits” are prohibited for
policy years on or after January 2, 2014 (this would impact UC SHIP
Fall 2014)

bossandnova

Kim, can you please spell out what is incorrect about the article? What difference in policy are you speaking about? I really want to understand.
And I hope you agree with the author that Kenya Wheeler is sort of a modern-day hero. Here is a dedicated student who is really working to make the world a better place through his city planning and transportation specialties. And continuing his research, study and advocacy–even while undergoing chemotherapy and brain surgery! We need Kenya to get better and take his place in government or nonprofit leadership. The Cal program he is a part of is fantastic preparation for his future career. By going public with his struggle with cancer, he is showing the kind of bravery and leadership that is a hallmark of the UC Berkeley tradition. I’m sure you must very proud of him.

Increyable

Seriously. I watch Kenya moderate a contentious conversation at a meeting once, and he was just masterful — totally impressive, and, even if he weren’t, still really hard to hear about his going through all this.

Kim’s comment, regardless of its veracity, is typical of UC administration. An entire story about a student working hard, struggling with his health, and all she has to say is, “There are serious inaccuracies in the article.” Nothing wrong with her writing that, but the omissions are telling.

Kim LaPean

I’m sorry if you took my effort to correct false information as a sign that we don’t care about this amazing student. Nothing is incorrect about the article you see now because it’s been edited to fix inaccuracies (see the note of correction). Of course we have compassion for Kenya, and our office works closely with the few students who are in his situation. We expressed a lot of concern and compassion when interviewed, including illustrating the options students have and all the ways we work with students proactively, but that wasn’t published in this story. Unfortunately it’s often the case that the compassion UC Berkeley staff have to support the students at Cal just isn’t “news” in the same way that showing something negative is. UC SHIP is one of the best student health insurance plans in the country, and in the next few years, when there are no caps on insurance, it will be an even better plan. In the rare cases that students reach their max, our office spends hours working through the options available to them, such as that every student in UC SHIP can go into a conversion plan immediately, and there are local and state options as well.

Increyable

“Unfortunately it’s often the case that the compassion UC Berkeley staff
have to support the students at Cal just isn’t “news” in the same way
that showing something negative is.”

Kim, neither bossandnova nor I were responding to the reporting in the article. I don’t think anyone expects a newspaper interviewing an expert source (e.g. you, when it comes to UCSHIP policies) to detail their emotional state alongside whatever information they provide. It was your comment below the article that was troubling.

I have no doubt that you have some measure of compassion for Kenya. If you know him (and I don’t know if you do), it’s pretty much impossible not to be strongly on his side. Still, it is striking that when you decided to make time to write something publicly on an article that was ostensibly about the personal struggle of a student, your own comment was to correct factual inaccuracies in the reporting. It’s totally understandable, I’m sure you are held accountable for inaccuracies like this published in the Daily Cal, and it’s important that we all have correct information; yet still sad that poor reporting was all you chose to mention.